Co-design and Development of EndoSMS, a Supportive Text Message Intervention for Individuals Living With Endometriosis: Mixed Methods Study.

BACKGROUND: Endometriosis, which affects 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease with a high symptom burden and adverse socioemotional impacts. There is a need for an accessible, cost-effective, and low-burden intervention to support individuals in managing their endometriosis condition. OBJECTIVE: This study aimed to co-design and evaluate the acceptability, readability, and quality of a bank of supportive SMS text messages (EndoSMS) for individuals with endometriosis. METHODS: In phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three 3-hour web-based (Zoom, Zoom Video Communications, Inc) focus groups. The transcripts were encoded and analyzed thematically. In phase 2, consumer representatives (n=14) and health care professionals (n=9) quantitatively rated the acceptability, readability, and appropriateness of the developed text messages in a web-based survey. All the participants initially completed a background survey assessing sociodemographic and medical factors. RESULTS: Consumer representatives demonstrated diverse sociodemographic characteristics (Mage=33.29), varying in location (metropolitan vs rural or regional), employment, and relationship and educational statuses. Participants reached a consensus regarding the delivery of 4 SMS text messages per week, delivered randomly throughout the week and in one direction (ie, no reply), with customization for the time of day and use of personal names. Seven main areas of unmet need for which participants required assistance were identified, which subsequently became the topic areas for the developed SMS text messages: emotional health, social support, looking after and caring for your body, patient empowerment, interpersonal issues, general endometriosis information, and physical health. Through a web-based survey, 371 co-designed SMS text messages were highly rated by consumers and health care professionals as clear, useful, and appropriate for individuals with endometriosis. Readability indices (Flesch-Kincaid scale) indicated that the SMS text messages were accessible to individuals with a minimum of 7th grade high school education. CONCLUSIONS: On the basis of the needs and preferences of a diverse consumer representative group, we co-designed EndoSMS, a supportive SMS text message program for individuals with endometriosis. The initial evaluation of the SMS text messages by consumer representatives and health professionals suggested the high acceptability and suitability of the developed SMS text messages. Future studies should further evaluate the acceptability and effectiveness of EndoSMS in a broader population of individuals with endometriosis.

Predictors of relationship adjustment among couples coping with a high risk of developing breast/ovarian cancer.

This study investigated the association between supportive and collaborative processes and dyadic adjustment in 94 women at increased risk of breast/ovarian cancer and their partners. Participants were recruited through two familial cancer clinics. They completed mailed, self-report questionnaires that included measures of psychological distress, dyadic adjustment (consensus, cohesion and satisfaction) and couple predictor variables (perceived support and team approach). Most couples reported average-to-high levels of consensus, cohesion and satisfaction, with a small proportion of couples (6.4%) reporting scores that reached clinically significant levels of dyadic distress. Greater perceived support was associated with better dyadic consensus and satisfaction, and dyadic cohesion and satisfaction were higher among couples who reported greater use of a team approach. General distress did not moderate the association between dyadic coping and relationship quality. There were no significant relationships between intra-couple congruence on support or team approach, and dyadic adjustment. Most couples had a functional relationship in the face of the current health stressor, although a subgroup may be at elevated risk of negative psychological consequences, including further relationship strain. The results highlight that dyadic coping strategies are important factors involved in the quality of couples' relationship following genetic counselling for breast/ovarian cancer risk.

Enhanced counselling for women undergoing BRCA1/2 testing: Impact on knowledge and psychological distress-results from a randomised clinical trial.

This randomised controlled trial evaluated the impact of an enhanced counselling (EC) intervention on knowledge about the heritability of breast and ovarian cancer and distress, as a function of BRCA test result, among high-risk women. Before deciding about whether or not to undergo genetic testing, participants were randomly assigned to the EC intervention (N = 69), designed to promote cognitive and affective processing of cancer risk information (following the standard individualised counselling session), or to the control condition (N = 65), which involved standard individualised counselling followed by a general health information session to control for time and attention. Women in the EC group exhibited greater knowledge than women in the control group, 1 week after the intervention. Further, at the affective level, the intervention was found to be the most beneficial for women testing positive: specifically 1 week after test result disclosure, women in the intervention group who tested positive experienced lower levels of distress than women in the control group who tested positive. The findings suggest that the design of counselling aids should include a component that explicitly activates the individual's cognitive-affective processing system.